Objective: Explore the caregiver experience of communicating about differences of sex development (DSD) with their children. Evidence-based guidance regarding how, when, and what information is shared by caregivers is lacking and is needed to inform optimal information sharing strategies for this population.
Methods: Qualitative semi-structured interviews were conducted with 15 caregivers of children with DSD, recruited from 3 multidisciplinary DSD clinics. Interviews were transcribed and coded using thematic analysis.
Results: Four major themes were generated: (1) communicate openly and honestly, (2) information sharing starts at a young age and occurs over time, (3) caregivers and providers should empower children with DSD by sharing positive messages to promote self-confidence and actively engaging them in their medical care, and (4) caregivers should understand and acknowledge the connection between gender identity and DSD to create a supportive environment for children experiencing gender dysphoria.
Conclusion: Transparent and developmentally-appropriate information sharing by caregivers with their children is essential for educating, empowering, and supporting children with DSD. Communicating with children about DSD can be a complex process for caregivers, and healthcare providers have a key role in supporting caregiver-child communication and increasing access to education and support resources.
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